LGDA at the ATS International Conference
Each year at the International Conference of the American Thoracic Society, the Public Advisory Roundtable hosts a day-long Patient-Family Forum where patients with chronic lung diseases and their families can share experiences with pulmonary doctors and one another, learn about how to manage their symptoms, and the latest in research and treatment for a variety of diseases. At the 2012 Conference, held in San Francisco in May, lymphangiomatosis and Gorham’s disease were featured at the Forum for the first time. Another first for the LGDA as a result of our involvement with ATS-PAR is the designation of August 5 -11, 2012 as Lymphangiomatosis & Gorham’s Disease Week.
Meet the Expert
Debra Boyer, MD, Assistant Professor of Pediatrics at Harvard Medical School and a member of the Children’s Hospital Boston Vascular Anomalies Center, met with three families to discuss the latest in research, clinical trials, and clinical care of patients of all ages with lymphangiomatosis and Gorham’s disease. This was the first time most of those atttending the meeting had ever been able to sit and talk with someone who had seen and treated other patients with lymphangiomatosis and Gorham’s disease. It was also the first time two of the patients had ever met another person with their disease. “It was wonderful to connect with another soul with the same disease as mine,” said lymphangiomatosis one patient who attended with her daughter. “And it was comforting to sit with doctors who seemed to have a genuine interest in us.”
We are grateful to Dr. Boyer for giving her time to meet with patients and families during this conference. Because this type of forum is of so much benefit to the patient community, preliminary planning is underway for a focused LGDA Patient-Family Conference to be held in the summer of 2014.
As a member of the Public Advisory Roundtable (PAR) the LGDA was provided an information booth at no cost, in the 2012 ATS International Conference Exhibit Hall along with more than a dozen other thoracic disease foundations, and scores of exhibits from the pharmaceutical, medical devices, and research companies; academia; publishing units; and other related entities. Many pulmonologists from around the world came to our booth for information about our diseases, our patient support programs, and about research.
In addition to the Booth, we were afforded a poster in the Hall where we were able to place important information about our diseases and contact information about the LGDA and our partners, the Lymphatic Malformation Institute, Texas & Seattle.